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General Study Information

The PRIDE Study is a national, online, prospective, longitudinal cohort study of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities. The central question of The PRIDE Study is "What is the relationship between being sexual or gender minority, which includes but is not limited to being LGBTQ, and health?" Because this is a longitudinal cohort study, we plan to partner with people for decades to understand how LGBTQ health changes over time.

The PRIDE Study launched on June 25, 2015 with Phase I - the "community listening" or pilot phase. We launched Phase II - the prospective longitudinal cohort study - in 2017. The community's responses from Phase I helped us design Phase II. But we continue to respond to community input, and by getting involved now, you can continue to help shape the study going forward!

A longitudinal study is a research study that collects health information about people over time. In The PRIDE Study, our longitudinal study allows healthcare providers to understand how lesbian, gay, bisexual, transgender, queer (LGBTQ), and other sexual and gender minority (SGM) people's health, lives, thoughts, and experiences change over time. With this information, we can better understand how sexual orientation and gender identity affects health, and how to support LGBTQ health and combat disease.

The PRIDE Study is a long-term study that aims to partner with LGBTQ people to understand the relationship between being a sexual or gender minority (SGM) and health. The PRIDE Study is divided into two phases to ensure that LGBTQ community members are able to help shape many aspects of this long-term study. Phase I - the "community listening" or "pilot" phase - began on June 25, 2015. In Phase I, we invited LGBTQ/SGM people to share their health concerns and research priorities to inform Phase II. Phase II is a prospective longitudinal cohort study, which will last for decades. We launched Phase II in 2017. Phase II is available on a dynamic web platform, which means that people can choose to participate via all web-enabled devices - smartphones, tablets, and computers. Phase II participation will include annual questionnaires as well as questionnaires about a variety of specific topics.

The PRIDE Study is run by a team of doctors and researchers at the University of California, San Francisco, but is also heavily influenced by a growing network of LGBTQ community partners through our participant-powered research network (PPRN) called PRIDEnet. You can learn more about PRIDEnet here. You can learn more about The PRIDE Study and PRIDEnet team members here. A few dedicated members of the LGBTQ and ally communities have made this study possible, but it?s your support that makes The PRIDE Study a success!

The PRIDE Study is committed to involving the LGBTQ and other sexual and gender minority (SGM) communities in the research process from end-to-end. For this reason, we have built mechanisms for participants to propose and prioritize research questions. Additionally, our participant-powered research network (PPRN) called PRIDEnet intentionally includes community members in the research process. As part of PRIDEnet, we are partnering with dozens of organizations around the county. PRIDEnet is being made possible by funding from the Patient-Centered Outcomes Research Institute (PCORI). More information about PRIDEnet is available here.

PRIDEnet is a participant-powered research network (PPRN) that is designed to engage sexual and gender minority (SGM) individuals in the research process from end-to-end. PRIDEnet will help make sure that diverse voices from the LGBTQ and SGM community are involved in creating, recruiting, analyzing, and disseminating information from The PRIDE Study. Currently, PRIDEnet is partnering with dozens of organizations around the country. More information about PRIDEnet is available here. If you would like to join PRIDEnet as a partner organization, please contact us at support@pridestudy.org.

Donations from individuals and organizations make The PRIDE Study possible. We have also received funding from the University of California, San Francisco Resource Allocation Program and the Patient-Centered Outcomes Research Institute (PCORI).

While some of our images are stock photos, we are truly honored to incorporate some of the work of local LGBTQ San Francisco based photographer, Sarah Deragon. Learn more about her not so corporate headshots here, or follow The Identity Project. Please check out her work!

Some of our survey questions are commonly used questions that come from large, health surveys. By using these questions as they were originally developed by other researchers, we are able to directly compare results from The PRIDE Study with those other studies. If we alter the questions, these comparisons are not possible.

Please know that our research team regularly collects feedback from various sources to examine which questions we should change to improve our research of LGBTQ health, and which questions we should add or completely remove from The PRIDE Study.

Security

Yes! As doctors and research scientists, we clearly understand that information about your life and health is personal. It is our priority to keep the information you share private and secure. All communications between you and The PRIDE Study are encrypted, and our data centers are secured by electronic and physical means. All our systems meet the University of California, San Francisco guidelines, and we have earned a Certificate of Confidentiality by the National Institutes of Health. All studies are reviewed by the University of California, San Francisco - Human Research Protection Program.

At the moment, it is rather difficult to get Apple Watch data into our databases for analysis. It requires a user to have an iPhone app and authorize that app to put data into our database. This is different from Fitbit or other trackers in which you create an account on Fitbit and then grant access to our servers to access the data in that account. Nonetheless, we are looking into including Apple Watch in the future and other ways that may make it easy for people to share that data.

Participating in the Study

Thank you very much for your participation in Phase I of The PRIDE Study. You can use the same username (your e-mail address) and password to log into the study's website. Some of the information you entered in the app will be automatically transferred to the website. However, because not all information can transfer over and the study has expanded you do have to "re-enroll." Additionally, we recognize that a lot can change since you downloaded the app. Because of this, we would greatly appreciate it if you fully complete "My Profile" and "My Health" even though you may have provided some of this information previously. By doing this, you can help us ensure that we have the most updated information!

At this point, the app will be going away since we have made the full study available through any web-enabled device (any smart-phone, tablet, laptop, desktop computer). We have already removed it from the Apple App Store. Please access the study via https://pridestudy.org, and not by the app.

We want enrollment and participation to be easy! The initial enrollment process takes approximately 10-15 minutes.

We understand that our Annual Questionnaire survey is long. We estimate that it will take approximately 45 minutes to complete. The exact time it takes may vary depending on the answers you give to each question. While we recommend that you complete the survey in one sitting, you can start the survey and finish it later by selecting “Save and Exit” in the upper-right corner of the screen once you begin the survey.

We have received a few comments about this, so we will be adding additional descriptions near those fields to explain why we are collecting this information. In short, it is so we can try to find you if we haven't heard from you for a few years (and you haven't officially withdrawn from the study). Following participants to better understand their health is an important benefit of long-term studies like ours. Please note that all fields are optional, so feel free to leave any information blank that you don't want to share with us.

Like all research studies, you can choose to stop participating in the study at any time. However, we hope that you'll stay in the study for decades, so we can continue to learn about you as your life changes! If you have a specific concern about the study, please let us know because we want to make sure we keep improving this important project! If you are currently enrolled in The PRIDE Study and wish to leave the study, you can do so by going to "Account Settings" to complete the "Withdraw From Study" section. If you need help with this, please contact us at support@pridestudy.org or give us a call at 1-855-421-9991 (toll-free).

You can let us know your preferred communication method(s) including e-mail, text message, telephone, and U.S. mail ("snail mail"). You can do this by going to "Account Settings" and updating the section called "Communication Preferences."

When available, results from The PRIDE Study will be shared directly with you and the medical community through publications and health conferences. Relevant resources will also be made available to everyone through The PRIDE Study website. Identifying information about you will never be shared. The data that are produced by The PRIDE Study will only be shared in aggregate, which means that we will only share summary statistics like averages, for the purpose of showing informative trends or details about the overall health of LGBTQ communities.

The study is open to all LGBTQ or another sexual or gender minority (SGM) adults aged 18 years and older who currently live in the United States and U.S. territories (Puerto Rico, Guam, United States Virgin Islands, Northern Mariana Islands, and American Samoa). If this describes you, please join the study. Help us spread the word, donate, or simply join our mailing list to stay informed.

We are working to translate our surveys and develop our website and databases, so that eligible participants can use a language other than English. We hope to make participation available in Spanish by the end of 2017.

At this time, The PRIDE Study is only open to adults at least 18 years old living in the United States and U.S. territories. We hope that you will use the sharing icons available here to help spread the word about The PRIDE Study.

Unfortunately, no. We are currently limiting participation to those who are at least 18 years old, who live in the United States and U.S. territories, and who identify as LGBTQ or another sexual or gender minority. However, we hope to expand the age range of the study soon. If you wish to be notified of when you can participate, please start the enrollment process here and please be sure to enter your correct birthday.

No. At this time, The PRIDE Study is only open to adults at least 18 years old living in the United States and U.S. territories. The research study is designed only for individuals to participate directly in the study, not through a relative or other contact.

The sexual orientation answer choices come from the sexual orientation identities offered in the pilot phase of our national research, where over 18,000 people participated from across the USA. We have added a few more options, to ensure that participants have answer choices that work for them and their own identity.

For both our sexual orientation and gender identity categories, if you don’t see something that works for you please use the ‘another’ answer choice and tell us more!

We call our primary survey the Annual Questionnaire – “AQ” for short. That survey measures the health of LGBTQ people across the USA and USA Territories. For 2018, we also have a Supplemental Annual Questionnaire, which consists of questions that we couldn’t fit into the Annual Questionnaire.

We have additional surveys that are not part of our Annual Questionnaires and that are only available to participants who have a certain identity (e.g., only bisexual, pansexual, and/or queer identity), a certain age group (e.g., people over 50), a specific health condition (e.g., high blood pressure) or reside in a certain regional location (e.g., a state in New England). The PRIDE Study supports these as ‘ancillary studies,’ because we know that some research in our health requires a focus on certain communities within the USA and US Territories. Sometimes though we send a study to everyone in the cohort to find out who qualifies and who doesn’t through initial questions in the study

The current “best practice” guidance for online survey research like ours does not allow participants to go back to change answers on previous screens. This is because the answers on previous screens can influence the questions you may still be shown in the survey.

If you feel you made a mistake, please know that we understand that mistakes happen. We encourage you to keep going! We find most participants answer most of their answers as intended, and that generally participants don't make many mistakes. We are willing to accept the few mistakes that happen so that we can follow the “best practices” of not using a back button.

We welcome your feedback on our research questions, because your feedback helps us make The PRIDE Study better for all participants. If you would like to give feedback, please send an email to support@pridestudy.org. If your feedback is about a specific question, please be as precise as you can when you describe the question.

We take your feedback very seriously! We collect all participant feedback and comments on questions. Our research team uses this input, along with feedback from our Participant Advisory Committee (PAC) and our Community Partners (see https://pridestudy.org/pridenet), as valuable sources of information for a rigorous review process when we improve and renew surveys. Your feedback helps us make The PRIDE Study experience better for all participants. Please let us know what is working well and what you wish would change.

Please know that we care about all aspects of LGBTQ wellbeing, even if we have not yet asked you for certain important information! Our research team struggles to find the right balance of important physical, mental, and social health questions to include, without making the Annual Questionnaire so long that too many people will not want to finish it. One way that we have tried to achieve that balance is by asking multiple ‘open-ended’ questions in our 2018 Annual Questionnaire (for instance, “Is there anything else that you want to tell us about your health?”). These open-ended questions invite you to tell us what we might not have already asked, and what you feel is important for us to know. If you have already completed your survey and still have suggestions for questions or topics to research, please email your suggestion to support@pridestudy.org.

We recommend that you complete surveys in one sitting. However, you can definitely begin and stop a survey to finish it later, or finish it on a different device. To ensure that the survey software remembers where you are stopping, please click on “Save and Exit” in the upper-right corner of the survey when you are ready to exit.

We realize that recalling past experiences with sexual violence can be difficult. If you’d like to talk with someone about these experiences, please consider reaching out to the National Sexual Assault Hotline (800-656-4673), operated by Rape, Abuse, & Incest National Network (RAINN; rainn.org).

For those interested in learning more about PrEP, or who wish to pass along information to other individuals, check out the following resources and talk with your medical provider.

For information about PrEP from the Centers for Disease Control and Prevention, please visit: cdc.gov/hiv/risk/prep/

Technical Problems

Currently, a participant has to complete every field in order for a section in My Profile to show 100% completion. However, as with all research, answering any question is optional, including in your profile. Perhaps you chose not to answer a question, and that prevents the health completion bar from showing 100%. We will work on changing this reading for a future update of this screen, after we have some time to review what constitutes "complete".

You can access your profile in two ways. To access your profile, go to https://pridestudy.org/. Right beneath the big green “Join Today” button, there’s a smaller link: “Already part of The PRIDE Study?” If you click there, a window pops up where you enter your credentials, and you can go back into your profile.

There are a few places in the questionnaire where you will be asked follow up questions, depending on the answers you provide. We found that these additional questions may not load well if you do not have a strong data signal. This is because our system is dynamically responding to your answers and customizing survey questions for you. If you can, try to answer the questionnaire while having a strong data signal. Typically these load problems resolve themselves quickly once the data speed or connection picks up again, but if you move on to the next page before the page loads, you will miss those questions. It is ok if you missed those questions this year. One benefit of partnering over the long-term is future questionnaires will likely touch on the same topics.

You may still have questions to answer in the Annual Questionnaire. If you log into your dashboard at http://www.pridestudy.org/login, you will see a CONTINUE button under the 2018 Annual Questionnaire in the "Surveys" section. Clicking on CONTINUE should launch the survey right where you last left off.

There are multiple reasons why some surveys may seem to end quickly. Some surveys may be limited to particular identities (e.g., only transgender women) or demographics (e.g., only those assigned female sex at birth). Other surveys may have reached the desired number of respondents for a particular study.

We understand that it may be confusing if your survey completes after only a few questions. However, we would like to assure you that you have done nothing wrong and we THANK YOU for your time and interest in participating in our surveys. We will continue to notify you as more surveys are developed, and we encourage you to participate.

We apologize if you have received reminders about incomplete surveys, when you have completed all the surveys on your dashboard. We designed our custom-built website to consider surveys incomplete unless a participant clicks on “Return to Dashboard” after reaching the final page of the survey. If you simply close your internet browser window once you reach the final “Thank You” screen without clicking “Return to Dashboard,” your survey may not be logged as complete.

We are working with our technical team to change this, so that the survey automatically logs as complete once you reach the "Thank You" screen. We have also revised the final screen of our surveys to remind you to click on “Return to Dashboard,” to ensure that your survey is logged as complete. Thanks for your patience and remember to click all the way through the survey and click on “Return to the Dashboard” after completing surveys, so you get credit for your time and effort!

If you are having problems participating in The PRIDE Study, please submit your issue through the Contact page here.

Help The PRIDE Study

In addition to study participants, The PRIDE Study is made strong by friends, family, and allies of The PRIDE Study. We thank you for joining us in our vision of a world where the LGBTQ communities' health is understood completely and where LGBTQ communities experience their health as being fully equal to all other communities' health.

If you go to The PRIDE Study website, at the bottom of the Media & Resources page (https://pridestudy.org/media), you will find materials to help you share The PRIDE Study via Facebook, Twitter, and e-mail.

Research Collaboration

We are establishing a review process so that we can formally evaluate all the exciting collaborations people have in mind. Please check back to learn more about this process. If you already have a collaboration idea, you can contact us directly at support@pridestudy.org. Please be sure to include the following in your e-mail: researcher's name, institution, position, and brief research question. To be informed about collaboration opportunities as they become available, please sign up for our mailing list.

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